Pages

A decade and counting...

I'm proud to say that Johnny and I celebrated our 10th wedding anniversary several days ago. Hard to believe it's been that long! We took a pass on taking a big anniversary trip abroad this year (postponed until next year when Bernadette's a little older and mom is a little more rested), but we enjoyed a wonderful evening out, thanks to Paola and my parents.

Of course, with 10 years of marriage, comes 10 years with lupus, given the fact that I was diagnosed just 6 weeks after our wedding. Back in the year 2000, we had the most wonderful Thanksgiving weekend wedding, thoroughly enjoyed the most spectacular honeymoon in Hawaii, and then within days of our return flight, my chest pain and other symptoms began. And boom...six weeks later, I had myself a chronic illness.

The cool thing is that I no longer think of my life as "before lupus" and "after lupus", even though I used to. In fact, I could have probably told you the days, hours and minutes I'd had lupus during that first year or so. But now, life is just "life" - and the blessed, abundant existence I have today is just as fulfilling and rewarding as it was pre-lupus, if not more so. I have two beautiful daughters under my belt, a handsome, loving husband who couldn't be more supportive, a book, a blog, a pug, and a wonderful circle of friends and family that I wouldn't trade for the world.

Today, I don't think of my life as a series of sacrifices, missed opportunities, or acts of desperation, as I did in the beginning years with lupus. Sure, there are compromises and negotiations that I continue to make, but those decisions fall in line with the way I want to live, despite my illness, not the way lupus forces me to live. No longer am I at the mercy of the disease, having to fight and claw my way through each and every day. The absence of pain is a glorious thing - and I continue to make choices to ensure that it stays like that.

So to Johnny - I say let's go another 10 years, squared. And to lupus - I say, "Bring it." I'm armed and ready to live well, despite you!

Comments

Sara, Congrats on all of the amazing things in your life. I'm wondering if you've thought at all about how life would be different if you had been diagnosed before dating and marrying your husband. I guess I'm just wondering if you think it was easier or more difficult than if you had begun the relationship chronically ill. Again, congrats!

Thank you for your post, Sara. It gives me a lot more hope that living with lupus doesn't have to be so bad. I'm well on my way to that point myself (was diagnosed almost 4 years ago) and it's nice to know that others feel the same way. Leslie, I was diagnosed with Lupus a year after my (now) husband and I started dating. We got married 2 years after my diagnosis. He stuck around through all my ups and downs with Lupus. That's how I knew he was a keeper.

SaraHard to believe it's been 10 years! I am grateful that I was there on your wedding day and know even with the challenges you have faced since then that you two are only that much more loving and devoted to one another. Thanks for your friendship and for sharing your story.

Leslie - I used to think about this a lot during that first year with lupus, and I decided there would have been challenges in either situation. As a newlywed, I really struggled with the notion that Johnny was getting short-changed...that he'd gotten something he hadn't bargained for. That guilt was tough to carry around. If only I'd be diagnosed beforehand...then he could have had the option to decide if he wanted a life with lupus or not. Now, that said - I can't tell you how many times I thanked the Lord above for sending me someone so loving, supportive and caring. In my time of need, he was there - and it would have been awfully difficult to take on life with lupus alone. But of course - we all manage the situtaions in which we find ourselves. I was discussing this notion with a fellow (single) lupite at a book signing recently, and she said that as great as it would have been to have someone to lean on during the diagnosis and those first months after - she was much happier not to have to worry about dealing with a spouse - his misgivings, misunderstandings, and difficulty accepting the disease - which I think is a valuable point.

The good news - I've met dozens of people who, in this order, have been single, been diagnosed, met the love of their life, married, and lived happily ever after. So I guess it works both ways!

I'm still in college and don't have a baby BUT I can certainly relate when it comes to prioritizing when it's time to get to bed! Thus, I applaud (and will probably adopt) your methods of staying focused.

Sometimes I have to make it marder for myself to get back into my e-mail my completely shutting down (as opposed to sleeping) my computer and packing it away...far away in my apartment.

Have you tried playing classical lullabies or nature sounds or Joshua Bell's Romance of the Violin? They help expedite my falling asleep time when I'm working on a tight schedule. I'm sure it will work for your babies too! :)

Oh my gosh, that is such a fabulous idea!!! The only reason I'm online right now and not in bed sleeping is because the computer was on my bed and I had to move it (thus logging on in the process) before I crawled under the covers. It was oh-so-easy to log on and check the blog. But if the computer had been off...I would be sawing logs right now. Guess what I'm going to do after I leave this comment? :) Thanks for the fabulous tip!

Pages

Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.